Backish

This is me pretending I'm back. Maybe if I pretend hard enough I'll actually be back.

It was a tough semester. It was also a longer semester than I'm used to, since China ended at mid-January, not mid-December. I've got a nice long break now- I've been on break for about a week and a half, and I've got a bit more than a month left. So that's something.

Anyways.

There's a survey for parents to help create some sort of community support thing. I think it's meant to be an alternative to the Autism Speaks First 100 Days thing, except actually autistic-friendly, accepting, not fearmongering... you know, all the things that are going to make life miserable because you're being told that if your kid stays autistic then life will be, and thus you make yourself miserable trying to change your kid's neurology. Which doesn't work, and oh hey this looks like a self-fulfilling prophecy. Realize that "good life" and "autistic" can go together, and it looks a lot less bleak. At least, I think that's the idea. So you should go take that survey if you've got an autistic kid and you're able to survey. Sharing it all over the place is also a good idea. https://www.surveymonkey.com/s/8C7XZZY is the link.

Also, the T-21 blog hop is on. It's already open for putting posts in, theme is social justice, and the runner says all disabilities are welcome. The link to the hop is here. As part of my pretending to be back, I will try and get a thing in for that tomorrow. Woo writing. http://downwitdat.blogspot.ca/p/t-21-blog-hop.html if you want to share that link, too.

I went to Beijing with some people from my university, since they ran a winter China trip for mostly sophomores and they spent the last two days in Beijing. That's really close to Tianjin, so I hung out with them for a couple days. We went to the Summer Palace, the Forbidden City, the Great Wall, and the Temple of Heaven. We also ate food that's more varied than what I usually eat. I'll happily eat the same thing for days, them not so much.

That's pretty much my story. 

Adventures in Explaining to People who Know They Don't Know

These are the best adventures in explaining, really. Not joking. People who think they know how things work will argue with basically everything I say, which makes it so much harder. It's especially harder if I'm still partially shut down, which totally happens. I was still in partial shutdown when I explained what happened at the museum, actually, but because no one was going "that can't be!" and "autism doesn't work like that!" at me as I tried to explain what happened, I was still able to mostly do it.
So what happened starts with sensory overload. This should not be surprising to anyone who knows me well, since my sensory processing issues are the most annoying issues I've got. I'm pretty much OK with the language issues as long as I'm allowed to write or type.
See, the museum was mostly marble, which reflects sound quite effectively. This led to a major case of The Sads, because it was loud and I couldn't really understand what the teachers were saying to me over it.
At least, I think that was how it started being bad. I got a vague sense of something not right when we were on the second floor (we started from the bottom and were working our way up.) On the third floor, the entrance to the exhibit hall had sounds that were bad, and I'm pretty sure that's how speech went kaput. Definitely a sensory overload issue. Then I hit the point where it took concentration to read the English captions on the art and artifacts, which, um, that's a bad sign. I'm pretty sure it's a bad sign when someone who lives by the written word as much as I do finds reading to no longer be automatic. I guess my body language was making it pretty clear that I was in distress (hi what is knowing what my body language means to neurotypicals I have no clue) so one of the teachers asked me if I was OK. I flapped for a bit trying to get words, then pulled out my notebook and started writing once I figured out that speech was not happening. Meh. Figuring out that speech is not happening is useful, because it means I can start writing instead, but it's kind of frustrating too, because I can talk faster than I can write.
I let her know that I was overloaded as best I could. [I don't know how to write all the relevant words in Chinese. I should fix that.] And then I went home and crashed. A few hours later, I had a meeting with the academic director, who had also been at the museum with us. She knew that I'd had a problem and left, but not entirely why. So she wanted to talk to me a bit about that in addition to the official reason for the meeting, which was about an independent study.
Yeah. So "I'm not always aware that I'm overloaded until I try to talk and discover that I can't" is one of those statements where I expect to get challenged. It's true, but I expect to get challenged, because it's not something people tend to understand. She asked a couple questions to try to understand, but there's a difference between "I don't believe you" questions and "I'm a bit confused, can you explain?" questions. Her questions were quite firmy in the second type, which tends to bring out the infodumps. It's hard to explain exactly how my body awareness (and emotion awareness) issues work, but I can toss out examples. I think the two issues are related, and I told her that too. The response to my saying I think the problems are related was that she thinks that makes sense. Really. This is a reaction I can work with. It's not the reaction I expected (I expect the worst,) but I'm glad that it's not. Flagship has been pretty consistently doing better than I expected of them as far as autism stuff goes.
Of course, it probably helps that I didn't explain much until after they'd already paid for the plane tickets and tuition and such. The longer you wait, the harder it is to discriminate based on disability without making it obvious that that's what you're doing. It's also harder to accommodate properly, so it's a trade-off. But they're actually doing a really good job at the whole accommodating thing. I'm seriously impressed.

The Little Things

Sometimes, activism means talking to the people and groups that have power now. Sometimes. Not always.

Sometimes, the day-to-day can make a huge difference. Maybe not in terms of systems, but in terms of something important clicking for one person. That's how change starts.

I want to talk about some of those things that happened.

My tutor and I were talking about computers. That's because the unit we're working on in Chinese is one about international business (whyyyyyyyyyyyyyyyyy.) He asked a bunch of good questions, getting me to think about stuff and answer in Chinese. That included things like what you would do for a computer getting used where it's really cold (the case should probably not be metal,) where it's hot (you need a better cooling fan,) and things like that. Then he asked a question that confused me. I remember hearing how when someone tells a sexist joke, one of the things you can do is to feign confusion and try to get them to eventually come out and say that it's funny because girls are *insert insult here.* Yeah, no. I was actually confused. He asked what changes might be needed to market a computer to girls. So I was confused. I said I didn't know what gender had to do with it, because I don't. He asked me what I use my computer for. I use it to do homework, surf the web, write stuff, and play games. I also use it to store documents. He said, "Oh," because that's pretty much the same stuff he does with his computer. 

And rather than get annoyed at me for thinking that trying to market a computer to a gender wasn't the best idea and it'd be smarter to market it based on what people are going to do with it, he agreed that marketing based on use was smarter. Then he asked a different question. He asked what a person using their computer for art would want (my guess is a touch screen and high resolution.) He asked what someone using their computer for games would want (I don't need to guess- a good graphics/video card and a lot of memory!)

Little things: my tutor may well have one stereotype less. [He also now knows that the same computer can get used by the same person for both art and gaming.]

My roommate studies English. It's not her major (teaching Chinese as a second language is her major,) but it's a class she takes. She'd been looking for a book that's in English and uses fairly simple language. I handed her my contributor copy of Loud Hands: Autistic People Speaking. I told her I had a piece in it. 

She's reading it. And the first person she associates with "autism"? An adult. Specifically, me. I'm no more representative of the entire population of autistic people than any one person ever is, but she's actually going to know, first-hand, that autistic adults exist. 

Little things: my roommate is reading Loud Hands to practice her English.

Artificial Social Expectations (and Lack Thereof!)

Lynne Soraya tweeted, asking for links to posts about the effects of artificial socialization requirements. That was meant for the workplace stuff, I think, and I've been lucky. My work at the Art of Problem Solving (my bosses do know I'm Autistic, though it's yet to be relevant to actual work stuff, just side conversation stuff) doesn't have that. I said I could talk about how the lack of that helped me, and she said she'd like to see it, so now I'm writing it.
I've met one of my bosses in person, once, before he was my boss. That's Richard Rusczyk, who talked at a math meet I was at, and then got recruitment emails sent to all the seniors who were at it. (I mean high school seniors.) I haven't met any of the other administrators in person, and I doubt I ever will. It's one of those much-worried-about online jobs, but it's legit. I would know: I've been working for them for 3 years now, and I get paid exactly what they said I'd get paid. Which is a reasonable amount for the hours, unlike the scams that offer unreasonably high pay to lure you in.
The main reason it's so awesome for me? I don't have to talk to people. I need to type to answer the questions the students ask or to grade their homework, but that's not talking. It takes up very little, if any, of my social energy. I can talk to the teacher (I'm a classroom assistant) if I want to and they want to and we both have time, but I don't need to do that to keep my job or anything. There are no repercussions for just logging in, answering student questions, and not interacting with anyone else. Unless there are actual questions (that I need to ask, I mean,) I might not even need to talk to the teacher. I usually do chat with them, but I don't need to. There's no artificial social requirement. None.
That is so important. Because sometimes, yes, I can be social. I really can. I've gone out for dinner and frozen yogurt (I prefer ice cream, but frozen yogurt is what I can get on campus) with friends while non-speaking, because my social desires and my ability to make spoken language work don't always coincide. I've also gone home when I'm just done, no matter how much I and my friends were looking forward to the thing. Like some other Autistic people, that's a kind of flexibility that I need.
It's the kind of flexibility that you don't get when it's expected that you'll go play golf with the boys, which is the example that Lynne gave, or when going out and drinking with your coworkers is basically expected (Hi, China, this part is going to suck, isn't it?)
When it's expected that I'm going to have the energy for a certain kind of social at a certain time, things can go wrong. When it's expected that I will be social at some point in some way that I can do, it goes fine. Those are very different expectations, and keeping it to the second one? Yeah, that should be considered a reasonable accommodation under the ADA. Not that it would help me in China, since ADA is American's with Disabilities Act, but it should be.

Current Events Project: Venezuela's New Labor Law

For Gender and Women's Studies, we each have to do a current events project at some point during the class. I had to do mine just about a week ago, and I did it on the new labor law in Venezuela. I actually think the law itself and their constitution are pretty cool- I've heard that there are some major problems including a shortage of toilet paper, which you should check a different article for if you want to know. I'm just looking at stuff that seems relevant to the labor law and gender/women's studies. I included the discussion questions that I had to come up with for the project too, and I won't argue if you want to talk about those too :)

Venezuela has passed and implemented a new labor law- penalties for noncompliance started on June 15, and there are many interesting and important things in it. Their constitution already contained the statement that all are equal to the law, explicitly and specifically forbidding discrimination based on race, sex, creed, or social standing along with a general statement against “any discrimination with the intent or effect of nullifying or encroaching upon the recognition, enjoyment or exercise, on equal terms, of the rights and liberties of every individual,” (Constitution of the Bolivarian Republic of Venezuela Chapter 1 Article 21 and “” Clause 1.) The constitution also guarantees the right to chose how many children they wish to have and the information and means needed to exercise this along with stating that mothers and fathers have equal responsibilities to their childen. (Venezuela Const. Ch. 5 ar. 76.) Given the explicit statements against gender discrimination in the Venezuelan constitution, their newest labor law which grants recognition to “non-salaried work traditionally done by women” (Ponniah) seems like one more (extremely important) step along their old trajectory. This is a step that people have campaigned for for years, with an international Wages for Housework campaign organized in 1972 and an international coalition of women of color campaigning for the same formed in 1975, remembering to challenge racism in their feminism (Lee and Shaw 397.)

Articles speaking about this state that full time mothers will now be able to receive a pension, though the constitutional statements of men and women having equal responsibilities to their children combined with the other anti-sexist statements found in their laws leaves me to wonder if it is the law specifying mothers or if it is other writers assuming that only a mother would take this pension.

The new labor law also requires 6 weeks paid leave for mothers prior to giving birth, extended without penalty if she is late to deliver and with the remainder added to the 20 post-birth weeks if she is early (VenezuelanAnalysis.com,) and it appears that if a contracted worker is subjected to sexual harassment by the employer and chooses to leave due to such, the employer may be required by this new labor law to pay the worker through the end of the contract anyways.

Discussion Questions: How do you think that full-time parenting should be defined? (Due to not reading Spanish and only finding a Spanish copy of the law itself, I don't actually know how Venezuela defined it!) What effects could this pension being just for mothers vs. for whichever parent is staying home have? How could this affect those who already do domestic work outside the home for pay, and how does this change based on the definition of full-time parenting/being a full-time mother?

Constitution of the Bolivarian Republic of Venezuela. (English translation retrieved from http://www.analitica.com/bitblioteca/venezuela/constitucion_ingles.pdf)

Ponniah, Thomas. "Venezuela's New Labour Law: The Best Mother's Day Gift." News for the Rest of Us. N.p., 15 May 2013. Web. 08 July 2013.

Shaw, Susan M., and Janet Lee. "Women's Work Inside and Outside the Home" Women's Voices, Feminist Visions: Classic and Contemporary Readings. 5th ed. Boston: McGraw-Hill Higher
Education, 2011. 391-413. Print.VenezuelAnalysis.com. "Chapter by Chapter Summary of Venezuela's New Labour Law." Venezuela News, Views, and Analysis. Venezuelanalysis.com, 9 May 2012. Web. 08 July 2013.

#Neurodiversity Reads

There is a group on Goodreads now, called Neurodiversity Reads. I have a pile of good things to say about them. I'm also a member, because BOOKS! And NEURODIVERSITY! Together! This is a good thing.
The group description is "Neurodiverse people, reading books about topics relevant to our lives."
So anything written by a Neurodivergent author counts as relevant, anything that's about a neurominority (so bipolar, autism, OCD, ADHD, etc) or multiple neurominorities is relevant. Advice books for neurodivergent folk are relevant. Books with neurodivergent characters are relevant. All my thoughts about neurodiversity in Tamora Pierce's writing are relevant, as is my "wait, is Alanna the Lioness autistic?" thought.  I really like Alanna, by the way- I dressed up as her for Halloween once.
So yeah, it's a cool group. There's a decent number of people in it, and there are some discussions in there that could totally be going on. Suggest books as yes, you should read this, suggest them as "this is a thing to stay away from!" Talk about the books. Just remember that this is a reading group that does not support eliminating neurodiversity. At all. Bigotry not allowed, be a decent human being and all that.
I'd also like to note that the group description is a good use of the word "neurodiverse." We're a group, so we can be diverse, and there are multiple neurologies represented within the group, so it really is a neurodiverse group in addition to being about neurodiversity. I just thought that was kind of cool. (Neurodiverse individuals, like said later in the rules, does not make sense. One person can't be diverse. People can be, individuals can't. Neurodivergent individuals could make sense, neurominorities could make sense, neurodiverse individuals just doesn't.)

On Easter Seals

Trigger Warnings: Ableism, anti-vax, silencing of autistic people using functioning levels and discussions of such.


Easter Seals:
I heard that you sent an apology and chose not to call autism an epidemic anymore. I'm glad you did it. It was a big step in the right direction. Huge, really. You moved from "It's an epidemic!" to "People are finding out, and we're going to help them get the services they need." One of these is scary. The other is honest. Yes, it can be hard, but help is there, and that's the big thing. (No, I don't like the way services look. But you're not the service provider or really the policy maker, so you're not the one who needs to hear about those issues. It'd be nice, since groups that are getting money have power, but that's not what this response is about.) And you know what? Employment training for adults is one of your things too! So that's another thing that's good. You're putting the focus where it belongs, on actually doing the things rather than saying scary things that increase stigma.
And yes, you're taking a lot of flack for it. It looks to me like a lot of it is from people who think vaccines and autism are related. Going to put it out there that I am fourth generation autistic, at least, direct line of descent. Yes, I'm fully vaccinated and autistic, but genetics. Genetics is a thing, autism runs in families, the big study everyone likes to point to blaming vaccines was found a fraud.
But you know what? That's besides the point too. The point is that autistic people are here, right now, and that referring to autism as an epidemic and a public health crisis does increase stigma. That means that for people who want their autistic children/children with autism to have a better life, calling it those things would be counterproductive even if it were true. (It's not. I really, really wish I hadn't lost the link to the study that found an autism spectrum rate right around 1% in British adults. Not "people living in institutions." General population, adults, 1%, right around where the kids are, no epidemic.)
They're also saying that you "sold out to high functioning adults." No. You listened to autistic people. The people who have the closest relationship to autism there can be for anyone. And it's not as if the people who were asking for the change and thanking you for it are all given the "high functioning" label. (No one ever gave me any functioning label, FYI. High is probably the one I'd get, but there is that whole self-inflicted scars thing, and the can't drive thing, and the can't actually do most activities of daily living thing... they seem to care more about verbal ability, though, and I usually speak well?) Anyways, functioning labels aren't as great as they seem because there are too many variables on what kinds of support needs people have, and some of the people asking for and thanking for the change wouldn't get the "high functioning" label by the standards of anyone who uses them. The idea that only someone considered to be "high functioning" could care about language is a fallacy, and one that comes from the old idea that autistic people wouldn't have thoughts or opinions. We do. Saying otherwise is just another way of denying the right of autistic people to speak about autism, claiming that anyone autistic enough to matter is too autistic to speak- that way, only parents matter. Which is, of course, wrong.
So thank you. Thank you for choosing language that doesn't add to the stigma and focusing on actually giving help. Fear tactics tend to work short term but cost a lot long term, and the cost of epidemic language is one the children will pay and that autistic adults are paying. Thank you for deciding not to add further to that debt.



This is the text of the apology they sent, just for reference:

Dear [recipient]

On Tuesday, we sent you an email about autism and we owe you an apology. We called autism an epidemic and some of you called us out on our language. You're right.

Autism is not an epidemic. Autism is not a public health crisis. Simply put, more people today are living with a diagnosis of autism, in large part because our diagnostic tools are better and more available.

In fact, in the next 20 minutes, a family will be told their child has autism. They'll have questions. They may worry about the future. They may feel lost and alone, unsure where to turn for help. This is where Easter Seals comes in.

Every 20 minutes, a child is diagnosed with autism. To help a family living with autism or other disability, make your gift to our Urgent Fund Drive.

Early diagnosis for young children. Behavioral therapy for school-aged children. Employment training for adults. These are just a few of the programs Easter Seals provides that help people with autism learn, grow and live their lives to the fullest. With your generosity, we can be on the front lines, helping as many people as possible get the support they need to achieve their dreams.

Across the country, all of us are doing more with less.

Not every child with autism receives appropriate services, not every adult can find residential and employment services, and many older adults still need assistance to live in their own homes.

With your financial support, we are able to provide essential services to children and adults living with autism so they can live the lives they choose. But there's so much more we could do.

Thank you for your support and I hope you accept our apology.

Sincerely,

Easter Seals

Echolalia Gets Me Pickles: Autistic Playing Ultimate

I'm Autistic. I'm in college. I play on my college Ultimate Frisbee team.
I don't pass for neurotypical, either. I'm not consistently capable of speech, and Ultimate is a sport where we're typically expected to be talking to our teammates. The team knows that I will do this if I am capable, but that this is a bit of an if. And that's OK. It took some time for them to figure out that I really do understand when I should say a thing and what I should say, I'm just not always capable of doing so (it took until I managed to explain this, which it doesn't occur to me to do except right after this happens- you know, while I'm probably still not able to speak? There's a bit of a catch-22 there, but I did manage to explain eventually, after I started bringing my iPad to tournaments.) But once I explained that? That was it.

Or the fact that I'm not always going to be particularly social, that parties for "team bonding" can be overwhelming? The captains agreed to send me an email or tell me at practice later if anything important was announced at a party that I hadn't been able to go to, had left early, or had gone to sleep under a table early. (Yes, I did that my freshman year. The party plan had been to bring everyone to the captain's house, party, and stay over before the tournament in the morning, and I was the first one asleep by a long shot. And that was OK too.)

Or, back during a week full of tests where I was also dealing with some cyber harassment issues (not related to the team,) and then at practice we were supposed to do a thing that I'm just not capable of. I kept trying, though, because "I can't do this" isn't a thing I'm supposed to have to say... ever. I'm not really autistic, after all... (That's completely false, by the way, I'm Autistic and pretty obviously so. It's just an internal monologue that gets installed in every autistic person who accomplishes things. If you're not a pity case, you just need to stop pretending to have problems, or something like that, it's the functioning labels false binary again, and ableism is to blame for both sides of it.) My continued attempts to keep doing a thing that I can't actually do, combined with old bullying (again, not with this team) coming back to haunt me, plus having been under a lot of stress all week, meant that I melted down at practice. I had enough warning that I found a semi-hidden corner behind a hurdle and next to one of the structural columns, and then welcome to meltdown-land. Both captains came over, asked me if I was OK (no) and if there was anything they could do (back off, ask again when I'm done flipping out,) and then actually did what I'd said. They checked in with me later, I let them know what all was up. They told me that if there is a thing that I really don't have the motor skills to do, I should do what I can and not worry about dropping out of the activity, which I've been working on. Oh, and I proceeded to melt down again after practice because I'm always scared of reactions and I was convinced it was only a matter of time until the other shoe dropped and they kicked me off the team.

A couple practices later, they wanted to talk to me after practice. I was convinced that was going to be the "you can't be on this team" or some such thing. Nope. It was a "Spring Break is going to have this set of things that we think could be difficult for you, these are some things we can think of that we may be able to do to help, and it's up to you to figure out anything else to run by us/anything else you can prepare for yourself/if you're better off skipping, let us know if there are other things we can do to help" talk. That's the one where I told them that I'm Autistic. Our coach already knew that I had some sort of disability, but I don't think he'd known exactly what it was.

I went on Spring Break with the team. It was good. I didn't do all that much social stuff with the team outside of the actual tournament games, and I sometimes went off to the side on my own when the rest of the girl's team watched the boys team play, but it went fine. Spring Break is when echolalia got me pickles, too.

See, we were in Florida, at the Tally Classic tournament. They had an unopened jar of pickles at the food tent (tournaments often supply food to participating teams.) And I saw them. And I was all "There are pickles! Because pickles! Pickles pickles pickles pickles..." jumping and flapping. I was acting very stereotypically Autistic. They hadn't been planning to open the jar for another hour or so, but they did, right then, and gave me a PICKLE. I like pickles. I walked back to my sideline singing "pickle pickle pickle pickle..." to myself, eating my PICKLE. So yes. Echolalia got me a PICKLE.
Early in the season, I had used my iPad to type when I lost speech at practice and still wanted to go for dinner/ice cream with my team mates. Later in the season (en route to Sectionals) I joked "My autism's showing, don't let it run away!" and people laughed. At sectionals, I used the iPad in front of the whole team- after the games, we went around and said a thing that we thought the team did well, a think we thought we did well, and a thing we thought we needed to work on. That was three separate circles around for three different open-ended questions of the sort that I have trouble with. For the first, I was able to type and then read my answer, but for the second two I wound up passing my iPad over to a teammate to have her read what I'd typed. And no one had an issue with it. My team did well at "Autistic person on the team" and the whole "Autistic adult is an adult," and it was good. So yeah.

I think that "Echolalia gets me pickles" being the biggest thing that sticks out in my mind from the season says good things about the team.

This is in the Down Wit Dat August 2014 Blog Hop, BTW. The theme is about how disabilities and such are a natural part of life.

Neurodiversity as part of Diversity Week

I had a meeting today with the director of my university's Multicultural Center. It was tiring. It was good. Good things happened.
I'm pretty optimistic about the administration giving the Neurodiversity Committee the funding it asked for, since it wasn't all that much, and of ten or so committees that asked for stuff after the 20,000 Voices Open Space Conference and the follow-up, our requests were the smallest. (Order of magnitude less than what the most expensive group asked for, at least. Not even joking, there were people asking for a full-time staff person.) And even if we don't get anything directly from administration? The head of the multicultural center expressed a commitment to doing one of the things we wanted (making neurodiversity part of diversity week) on his own, basically as a "the head of the multicultural center can do that" thing.
For the 2013 one this fall, they will have to run it pretty much without me, since I'll be in China, but they know they have my email and that I am pretty good about answering stuff, and that I am more than willing to. They know some of the stuff I was thinking about too...
Like, as far as "why is this important?" I mentioned that understanding other cultures is a good thing and that Autistic culture is a thing. I also talked about how being ready for more Autistic people who know they are autistic and for some who don't speak (remember, more and more Autistic people with significant support needs and/or who don't speak are in mainstream classes doing the same work and will be qualified for college if they want it) before they come (as much as possible, anyways, it's already started) is important. It's similar to building the ramp before the wheelchair user gets there, in a way- make it already accessible so that the person who needs it doesn't have to navigate an inaccessible system in order to get access.
For the 2014 Diversity Week, I'll be more directly involved since I will be back on campus and that makes a big difference for my ability to affect and participate in things that happen on campus.
So yeah. Long story short, my college is going to be getting more neurodiversity-friendly and that's got to be a good thing.

Get Angry and Change the World

Image Description: An upside-down crown and the words "Get angry and change the world" in all capitals. "And" and "the" are in smaller font. The text and image are white, on a green background.


No, really. Do it.
Think about how to do it best, of course, but go get angry, and go change the world.
There are lots and lots of cliches that people will tell you about anger. Some of them are true. Some are not. Go ahead and write while angry. Don't hit send, but go ahead and write that reply, go ahead and write that letter, go ahead and blog about it while you are still seeing red. Wait to publish or send until you're at least to a point of calm anger, so that you can check to make sure you didn't say anything that will just make it worse, but write while you are still angry. Use that anger.
Anger is some of the best fuel you will ever get, and it's free. All it takes to get is someone doing something to you that was wrong. Go. Being nonviolent doesn't mean you can't get angry. It means you can't go smack the person who angered you upside the face, but writing about exactly why it was wrong and how to fix it, even on the internet, is probably going to change more than hitting them anyways. Hitting them might get that one person to not mess with you again. Maybe. Or it might just get you in more trouble. Blogging about it has the chance of creating a social media crisis where they are willing to make whatever changes they have to to make it all just go away. Sending a letter has the chance of reaching a superior who had no clue this was going on and now wants it to stop. Making it an open letter that you send gets you both of these things.
Besides, one of the cliches that is true is the one about a small group of dedicated and concerned people being what changes the world. This small group may or may not have been nonviolent, but I would bet that anger was usually at least part of their fuel.
I can tell you that anger is often my fuel. With executive functioning issues, I'll take whatever fuel I can get, and anger works.
So go get angry and change the world!

Responding

The ignorance is rampant. The ignorance has been rampant. 

We have been responding. We will continue responding.

And we are becoming more proactive.

Rather than simply trying to refute, we are putting our own statements out.

Correcting misconceptions only sometimes works, but stating something new makes a new association.

That's what we're doing.

Paula's This is Aspergers. This is Autism. does this.

Autism Shines does this.

Autistics, Not Monsters does this.

The Autistic Adults Picture Project has been doing this for years.

People are sharing responses at thAutcast.

Lydia of Autistic Hoya is making a video using pictures along these same lines.

I made one, using an old picture of mine.

Image description:

At the left side, there is a young girl sitting for a picture. She has long brown hair, is wearing a purple turtleneck, and is smiling with her teeth not quite together. At the right is the following text, blue on a purple background:

This is Alyssa.

She's probably five in this picture.

She will grow up to be called horrible things by people who have never met her, simply because of her neurology. None of these things are true.

She will be afraid to put up a recent picture in which she claims her own neurology. She knows Google exists, and she knows Google Images exists too.

But most of all, she knows what so many still think of people like her, and she is afraid.

You see, she is Autistic.

She doesn't like loud noises.

Sometimes she doesn't understand why people act the way they do.

She has trouble putting things into words, sometimes, though it's easier when she types. Handwriting would work... if she could read her own writing. She mostly can't, though.

She might not look you in the eye. She might take you very literally. She is Autistic.

She isn't scary. She is Autistic.

To George Takei- Thank You

Dear George Takei,
I number among the Autistic Trekkies. There are quite a few of us. I saw how many people from the original Star Trek joined the Sound Off For Autism Speaks, recording messages for people in return for a $299 donation to Autism Speaks, and I admit it. I cried. I cried when I saw each name of a person I respected giving money to an organization that considers me afflicted with my neurology, that silences those whose neurology is the same as mine for offenses so simple as believing ourselves not to be afflicted, for opposing the idea that we are broken, sometimes for (protected) parodies.
I wonder if it is because you understand being in a minority group that people think needs fixing that you didn't record for them. I admit that I don't really care why you didn't at the moment- I just care that you are not helping an organization that would like nothing more than for no more people like me to exist, that does horrible things to people like me.
Just like I am saddened by people helping organizations that want to cure me of who I am and scared of the effects no matter why they are doing so, I am grateful to those who don't no matter why they don't. So thank you, George Takei. Never feel badly for failing to support those who make the lives of Autistic people harder on a daily basis, spreading the fear of us in the race to cure us. Never feel badly for failing to support a group that will use the work of a person from the minority they claim to represent... without that person's permission, then lie about taking it down. Never feel badly for failing to support those who will throw the Autistic people who are here now under the bus in the race to find a cure for who we are, that no one ever be subjected to our existence again. Instead, be glad. Be glad that you did not hurt those you meant to help.
Know how many of us are glad that you did not join in this, whatever your reason for not joining may have been. Know that I am one of them, and that I am glad to be a fan of yours.
Alyssa

I Love Being My Own Autistic Self

Trigger Warning: Discussions of presuming incompetence, preventing autistics

That's Landon Bryce of thAutcast's new book. I got it for Hanukkah, and it was even better than I expected it to be. That's saying a lot, since I like thAutcast, I liked what Autoons I'd seen before I got the book, and I read a lot of very good reviews before I got it. And no, he's not paying me to write this review or anything. It's just that good.
First things first: If you have ever, will ever, or may ever interact with someone autistic ever, go get the book:
E-book/Kindle
Paperback
Done that? Good.
So, this is why I thought it was really, really good- there were three autistic main characters, all different. One was non-speaking. None considered themselves tragedies. There was a friend, a sibling, and a doctor as well- the sibling "love[s] her brother, but hate[s] his autism," and the brother "love[s] his sister, but she hates a part of him." The autistic brother knew the kind of things his sister and the doctor talked about, and he was aware (and disapproving) of the fact that they didn't like it when he disagreed with them.
I had to try (and fail) not to cry as I read. I saw people assuming Marko (Marko is the sound that means me-me being the one who does not speak) could not understand because he could not speak, Marko thinking that he is still worth getting to know, and most people not understanding. The other autistic- I think it was Vector, though facial recognition=not so good, was still friends with him, and understood that friendship is important. Pang was sorry that about Vector being autistic, but Vector was not sorry. It's a common theme- people are sorry that we are autistic rather than taking the time to understand us. People assume we can not understand rather than taking the time to understand our communication. People assume they know better than we do what we want to be called. And the comeback when that came up! I swear, "You seem like a person with rudeness when you tell me what to call myself" is my new comeback to people who want me to use person-first. It was great. Things happened in this short book that reminded me of what really happens. It's a book that a child can read and that an adult can still learn from.
The characters were well-developed too, I thought. All the Autoons had feelings. All were capable of friendship. All felt like three-dimensional characters, meaning that in thirty-eight pages of mostly pictures, Landon Bryce managed to paint three better autistic characters than many books do in over a hundred.

Finding Home at the Gala

The other of two things I wrote for the ASAN November Newsletter. 

On November 14, I also went to the ASAN second annual gala. I was almost an hour late, having gotten stuck in traffic on the way from the Disability and Inclusion in the Humanities panel to the gala with the organizer of the panel and a few of the panelists who were also attending the gala, but what I arrived to was more than worth the wait. When I arrived, it was to…Autistic space!
Autistic space is not like neurotypical space. In Autistic space, stim toys are readily available, such as the blue ASAN Tangles at every seat, and carrying them with us to fidget with when talking to other attendees was completely normal. Instead of the loud clapping applause normally used, we use jazz hands or flapping at the end of speeches or anywhere that clapping would normally be appropriate. That the inability to use spoken language and having nothing to say are two completely different things is accepted as a fact, and is not an issue that leads to continuously needing to prove and re-prove competence. If and when a topic is difficult or triggering, it’s considered acceptable to step outside. There is no need to apologize for acting visibly autistic or for the “forgetting” of faces that can come from face-blindness or from simply not looking at people. Sure, this was a gala at the National Press Conference, but that didn’t mean that we suddenly needed to act like neurotypical adults at their most formal–the social rules common to the outside world need significant modification for use in Autistic space, including a requirement of being as direct and clear in communication as possible given current language abilities and a complete suspension of asking for eye contact. That’s what I found at the gala. I found people talking about important things in language I could understand and being OK with the people fidgeting and flapping and looking off in a completely different direction than the speaker, knowing that this was simply our natural way of being, not some attempt at disrespect.
I heard about self-advocacy and including people in communities, about the importance of Alternative and Augmentative Communication, and about needing to stand together. I heard about not letting the world isolate and mistreat any group that they were somehow convinced was really the group to isolate, no matter how much “but this time we’re sure!” we might hear. They’re never as sure as they think they are, not with Autistic people and not with anyone else. I heard more about the Loud Hands Project, which I submitted a semi-poem to, and finally got to see the video used for fundraising for it. All things affirming the acceptance of autism as a difference that is a disability not in need of elimination or cure, but simply support for a different way of being, were to be found at the gala–it was one of few spaces where I felt completely safe.
Kassiane wrote after Autreat that she had found her family, that it was the Autistic community, and after traveling to Washington, DC for the annual gala, I have to say the same. The Autistic community is another family for me, one that makes sense and that understands both the advantages I have and the difficulties I face. The Autistic community understands that this is who we are, for better or for worse. The gala itself may have only been two hours out of a busy day, but in a world that is not yet designed for people with brains like ours, it meant family and it meant home.

Rest In Peace

Trigger Warning: Death

I found out that one of my professors passed away the night between September 30th and October 1st. I had known that he was ill, and that he was out on sick leave, but had thought he would be back in the spring. Apparently not. I can't give you his name, because then you could figure out who I am, but I can still say my piece for him. So here goes.

When I first came to college, I had some idea of what I was doing, but not all that much. I wasn't living in the freshman engineering dorms that were meant to help us adjust, and I was only taking one of the "expected" first semester engineering classes. I had two math classes, both of which I wound up tutoring for. He taught one of them. He saw that a freshman was signed up for it and checked in to make sure that I would be able to handle the class. He checked in a couple times to make sure that I understood what was going on, but that stopped after I was the first one done and the top of the class on the same quiz. He kind of figured out that the math was OK for me.
When I somehow concluded that the final was a day later than it really was, he drove an extra forty minutes or so each way to come to campus and let me make it up the day I had thought it was. He wasn't even mad. He wanted to make sure I didn't make that mistake again, but the whole lecture about it went:
Him: This isn't your first semester in college ever, right?
Me: Yes, it is. I just had a LOT of AP credits.
Him: Oh. Well, finals are something you shouldn't mess up. If I hadn't been able to come down today, you would have been sad.
Then he handed me the test. He never said a word about my having missed his final again. Ever. (I still got an A in the class, too!)
The next year, I had him for Real Analysis. He asked me about how my summer had been, and he actually wanted to know. I tried to give the quick "China was cool" story, but he (being one of the few people who could read my body language and hasn't known me my whole life) could tell, so I wound up telling him about the sucky parts of China from that summer too. He kept an eye on me for different reasons, this time- he knew that I was taking a credit overload and wanted to make sure I didn't overstretch myself. And on the way to or from class, we would often talk.
I'd hear a bit about his time at MIT. We'd talk about math. Or science. We both knew that the other had a tendency to be a bit of a lone wolf. (No, I don't think he knew that I'm autistic, but I wouldn't put it past him to have figured it out and not said anything.) He was generally OK with my lone-wolf status, and he only insisted that I work with someone else on an assignment once in the whole year (as opposed to offering the chance to do that practically every week.) He taught so that we understood. He was a great teacher. He really was.
And yes, he did write one of my letters of recommendation when I was applying to the graduate program in math at my school. I couldn't find him on campus, so I asked him by email. I'm guessing that he was already sick, but he didn't say anything about it then. He wrote the letter. He said he was writing a VERY good letter, all caps from him. I believe it. I'm guessing he left out the part about missing his final, though the department chair already knew I'd done that my first semester. Anyways, I will miss him. The funeral is Wednesday, and if I get the chance, I will say a few words there. Shorter than these, but something.

Self-Advocacy is important for EVERYONE.

From the trivial to the life-changing, the ability to advocate for what you want and need is important. Think about it. Let's say that you were taught that whatever went wrong or was not what you wanted, you could not do anything about it because you didn't really know what was best for you and that what you wanted did not matter. Let's say you were taught this through the actions of someone who thought they were doing what was best for you by protecting you from everything, but whose belief that you could never have autonomy over your life or live on your own showed in everything they did. And slowly, you came to believe them. It's a self-fulfilling prophecy, isn't it?
But if you were taught that what you want matters, and that if you bring up an issue, someone will listen and try to fix it, you learn that it is well worth the effort to try. You learn that you can tell people what you need, and that if they don't listen, that it's their problem, not yours. You learn to advocate for yourself. Sometimes it is frustrating- perhaps people only want to listen to your parents. But if all your parents will do is demand that you be listened to, occasionally, as a last resort, jump in with those who simply will not listen to a child, and sign the paperwork to make whatever it is you asked for legally consented to, you learn that you are in control of your own life.
Clearly, the thing to teach is self-advocacy if long-term independence (or long term interdependence on people of our choosing) is to be achieved.
Now that I've done all the nice rhetoric, perhaps you want to know how to actually do this. It's not that hard, really. (This is advice directed at parents, now.)

• Get some form of communication up. It's OK if all you can come up with is a way for two-choice questions to be answered, though it's certainly better if you can come up with a way for your child to come up with what they want and say it themselves.
• If it doesn't really matter (like wanting to wear a costume that doesn't violate the dress code to school, perhaps,) just go with it. It teaches your child that their wants do matter.
• If there is a good reason that they can't have what they want, explain why. The explanation can come later, if need be, but make sure they understand.
• Get input on the important things. REAL input. And take it into account.
• Bring your kid to IEP meetings and insist the teachers listen to what your kid says (or let your kid write something to them if your kid doesn't want to go/doesn't want to talk to them.)
• When something goes wrong for your child that you could handle yourself, but which your child also has the language skills to make an attempt at, offer them the chance to try.
• If they ask you to handle it this time, that's self-advocacy too- they asked you to do something.
• Remember that cruddy ice cream example on the Autism $peaks transition kit? Go ahead and do that if it comes up, starting as soon as your kid has the language skills to do it. Because for someone just learning to talk/just learning to use AAC/just learning to communicate in public methods, a fairly low-stakes self-advocacy isn't a bad way to start.

And yes, people who need help with daily living can advocate for themselves. I'm not entirely sure why this needs stating, considering that non-disabled children advocate for themselves on a fairly regular basis and needing help with daily living is considered part of being a kid, and also considering that a big part of self-advocacy is asking for that help and then getting it. If you can do it all yourself, you don't need to advocate to get other people to do things.

This has been in response to Emma Refuses To Get Off the Bus and A Self Advocate is Born! It's a great story, and it demonstrates how important self-advocacy can be from a young age by way of Emma noticing that the bus was taking her to the wrong school and refusing to get off in the wrong place. She did the right thing there. She said all the right things, telling them they were taking her to the wrong place, and in the end she simply refused to get off.

Ethan's Story: My Life With Autism

This is a children's book about autism written by an eight year old with autism. (His language choices in the book lead me to suspect he prefers person first for himself, but if anyone actually knows what he prefers go ahead and let me know.)  The way he talks about his autism is pretty much what you would expect of an eight year old who is comfortable with himself : he is matter of fact about what he likes and doesn't like, what he's good at, and what is harder for him. He credits his autism for some of his strengths in addition to being aware of what is harder for him because of it, and he gives some specific examples of how to help him fit better in situations. If you want to help someone get a basic understating of autism, or if you want it yourself, or if you just want to be reminded that some people understand that autism is not inherently tragic, I say this is a good read and a good, if a bit simplistic, portrayal of a child with autism. (And seriously? The writer is eight and it's a children's book. I think simple is OK here.)

And now I talk about the Autism Summer Institute

A good friend of mine was at the Autism Summer Institute at UNH. It was also her birthday close to this, and we don't live particularly near each other. She planned to have a birthday dinner one of the evenings at this conference. She invited me. So I hitched a ride up with another conference goer, and I slept on this friends floor while at the conference. I'm kinda a broke college student, so that's how I saved a decent bit and made going to the conference affordable.
Anyways, from the beginning:
The people I went up with did not realize that events started Monday morning, so they didn't get to school to pick me up until about 12:30pm. (They had planned to be earlier than this, but were running a bit behind schedule.) The strap on my duffel bag broke while I was running out to meet them, which was annoying. On the way up, we stopped at a Subway to eat, since people need food. We got to UNH around 4pm. My friend came down to meet me. She was not speaking at the time, but she is a very fast typist. I mean, I can do 60ish wpm, sometimes more when I'm on a roll. She falls somewhere between 120-180 wpm. That's getting into the range of how fast people TALK. So a laptop was quite handy, but it didn't really interfere with communication. She showed me a chapter from one of the novels she was working on during this time, and we talked about stuff and things and things and stuff. It was pretty fun, though I wish that the stuff that caused her to go non-speaking hadn't happened.
Conference officially stuff ended at 4, but a reception started at 4:30, so around 4:45-5, I went downstairs. I fangirled at a lot of people then. I mean, both co-founders of ASAN were there, and Amy Sequenzia was there, and there were so many awesome people, and yeah. I hung out with some of them, and we had a good time. The conference even put stim toys on the tables. It was pretty awesome. Eventually my friend came down (she was feeling better, and talking was working again by this point.) We discussed food options for dinner, and we went with ordering Chinese delivery. I got Udon noodles for me (yum!) and they even included chopsticks. When the food arrived, we jumped and flapped and shouted YAY over and over. Because we can do that if we want to, and we wanted to. They make the Autism Summer Institute and autistic friendly space, so it was all good. The delivery guy seemed a bit surprised, but we didn't really care.
Post dinner, we watched Wretches and Jabberers, and I assisted a math class since I didn't get the night off. Yay multitasking! After the movie, two of the people who were a big part of making it ran a Q and A session. I headed back up to go to sleep during it, but what I was there for of it was good. We'd see them typing answers to questions a few times later in the conference.
Tuesday morning, I got up, ate my friends leftover rice, and headed down to see Julia Bascoms keynote, which was about  communication and voice, which does not require speaking in the sense we usually think about it. (I fangirled at her too.) And she says my submission is going to be in the Loud Hands anthology. WOOO! Then we had breakout sessions, lunch (more of the leftover rice, since I wasn't about to spend money on conference lunch) and more sessions. I went to the session my friend presented, and then I went back to the room to decompress. Even in an autistic-friendly space, that many people is tiring, and there was still the dinner.
Now dinner. Dinner was interesting. I won't go into too much detail about it just in case someone figures out who the friend is since I don't think she wants loads of details about this, but it was so-so. The autistic people were winful, and the NT friend was pretty cool, but my friends parents are really ableist. They were pretty uncomfortable when I was flapping, and they at least tacitly support the JRC. Which is pretty bad. I helped my friend get through it, and I stuck around while she calmed down after. Post that, parallel play, aka we're all on our computers in the same room, sometimes interacting with each other and sometimes not. T'was good.
Wednesday was more presentations, and I got a free lunch ticket from another friend, so I got conference lunch. Learned a lot, had lots of fun, headed back, stopped at a really slow restaurant on the way, was exhausted when I got back, and fell flat on my face. That is my story.

UK finds that 1 in 100 ADULTS is autistic, too

Oh hey. I said I was going to talk about this post jet-lag, and now I'm talking about it. Over in the UK, they actually looked around for how common autistic spectrum disorders (grrrr.... I do not like the word disorder because it's not STRICTLY a disorder. It's a potentially disabling different order, not a lack of order.) Anyways, it turns out that if you properly evaluate the adults, about 1% of them are autistic too. I guess we're looking at better identification, not a sudden epidemic. Good to have some evidence to back up what I was pretty sure was the case anyways. So: Autism is just as common in adults, but anyone who talked/functioned really at all without supports wasn't getting identified as even having anything, but now we can tell if someone is autistic should they show up and get evaluated. No epidemic. Some of us are just wired differently, and we can actually get quite a bit done, especially if you make some allowance for the problems we have which aren't actually related to the job we're supposed to do.

Something Good

So, I was chatting with a friend from math team when he was ``tumbling," which is apparently means using tumblr. So I asked what his username was and followed him. I also gave him the heads up that ``and I guess I should probably tell you that I'm autistic... since if you read much of anything I posted, you'll figure that out anyways..." And he didn't say anything. I asked him a few minutes later about his complete lack of reaction, and his response was that he'd been tempted to say that I do very well with it, but that he saw my post about functioning labels and wanted to read it before he made a fool of himself. Which is actually a great reaction. Seriously: He admitted that he thinks I do well with it (I'm totally cool hearing that, since I interpret it as ``Your coping skills are really good!" which is also a good thing to say as far as I'm concerned,) he saw that I don't like functioning labels, and decided to wait to say anything until he understood why. He decided to read some of what is out there so that he knows at least a little before joining a conversation. It's a good reaction.